Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study

APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)

Research output: Contribution to journalArticlepeer-review

9 Scopus citations


Background: Implantable cardioverter-defibrillators (ICDs) are increasingly being used to prevent sudden death in the growing population of adults with congenital heart disease (CHD). However, little is known about their impact on patient-reported outcomes (PROs). Objective: The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs. Methods: A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents. Results: A total of 3188 patients were included: 107 with ICDs and 3081 weight-matched controls without ICDs. ICD recipients were an average age of 40.1 ± 12.4 years, and >95% had moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviors did not differ significantly among patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56; P = .011). Those with secondary compared to primary prevention indications had a significantly lower quality-of-life score (Linear Analogue Scale 72.0 ± 23.1 vs 79.2 ± 13.0; P = .047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (vs controls) from Switzerland, Argentina, Taiwan, and the United States. Conclusion: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.

Original languageEnglish (US)
Pages (from-to)768-776
Number of pages9
JournalHeart Rhythm
Issue number5
StatePublished - May 2020


  • Adult congenital heart disease
  • Implantable cardioverter-defibrillator
  • Patient-reported outcomes
  • Quality of life
  • Sudden cardiac death

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine
  • Physiology (medical)


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